I have a neuroendocrine tumour in the small bowel and liver lesions

i just had surgery for a NET in my illeum (end of small bowel but surgeon took 6" of colon (hemicolectomy) as a precautionary. Was in hospital for 3 day. Percocet helped with any pain very well. I am home now recovering.

after surgery, rest! and try to walk everyday prior to and after it will help tremendously. A good resourse fir me was chrisbeatcancer.com. It is priceless!

Thank you so much for your reply and sharing your experience.

Wishing you a fast and full recovery to good health.

Good morning,

Thank you so much for the advice and link. I have been praying so much and that's what has been helping me to cope.

I was diagnosed with multiple Net’s in the small bowel, and 16 Net’s on my liver December 2022 I’ve been on Octreotide injections monthly.. November MRI showed no growth or new tumors.. I haven’t had any surgeries and go for another MRI this April..

@zalda, I'd like to add my welcome. I'm glad that fellow NETs members like @mimisayhi and @vinnie694 saw your post in the Cancer support group. I moved your discussion to the support group dedicated to Neuroendocrine Tumors (NETs) here https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

You can use the search function to find other discussions related to small bowel NETs. I think you might find these 2 to be helpful as you prepare for surgery.
- Laparoscopic Possible Open Surgery Resection - Small Bowel NETS
https://connect.mayoclinic.org/discussion/laparoscopic-possible-open-surgery-resection-small-bowel-nets/
- NETs: Scheduled for small intestine resection: What to expect?
https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/
Zalda, are you seeing a NETs specialist? When is your surgery?

@vinnie694
Curious how your condition is now and what treatments and testing you’ve had since

Best wishes

@vinnie694 & @Ins83: DIDDO Ins83! I think Vinnie and my NET small bowel cancer is very similar (dx 10/21 well differentiated, grade 1, KI67 -1%, stage 4 w/liver metastases. After dx I did ok w/stability on Lanreotide 28day inj. - until MRI revealed 40% tumor progression!
I chose Beta PRRT Lutathera treatment (6/24-12/24) @ CoHope Duarte & had drastic resolution of most tumors & stability of all. Scans reveal primary tumor smaller than at dx! Doing my 3mo MRI’s and shows continued tumor resolution so far. Tomorrow 10/13/25 is MRI day so will have update soon. Feel good & restoring my ‘ol life! Reality keeps me vigilant ‘cuz I know those lil devils are napping. Hope is alive to keep them in my rear view mirror! dbamos1945

@dbamos1945 Very similar, well differentiated, grade 2, KI67- 6.6% Stage 4 , small intestine, metastasized to liver. Advanced stage.. Absolutely love the statement "I know the little devils are napping" Just a note for hope and prayers for your testing today....

@lns83 Currently still on Ocreotide (2 shots every 28 days) ( I also have carcinoid syndrome which Lanreotide didn't help).. After a period of time with no new tumors and no growth, a few started to grow, not substantially but growth just the same. My Doctor at Mayo said I should start looking into the next possible treatment which was PRRT Lutathera.. I am a pretty decisive, after researching the treatment, I decided not to wait, After 4 treatments, I was blessed with positive results, No new tumors, some of the smaller ones were not visible, and the Larger ones were decreasing.. But like @dbamos1945 stated in her response, I know the lil devils are napping! But overall I feel good..